Because big things are happening this week and I will want to share. ( Hopefully in real time) So excuse this random catch all post. Which I hope will bring you up to speed.
Last blog update we were in the hospital and Katy was battling rejection. That was back in July, and she spent all of August fighting the fight and has FINALLY turned the corner.
So in my defense I didn’t have a lot to say and it was all about survival.
To be honest it has been a very dark time for me (us). The thought of this heart failing Katy is heartbreaking. I just keep thinking how could it be that she made it to transplant and the new heart would be what ended up killing her. It was that real and that is scary. At least with Katy’s old heart I always knew we had options…we weren’t out of time. If Kate continues to reject this heart,there is really nothing that can be done. So that has been hanging over our heads. All of us thinking it… no one wanting to talk about it. Of course we knew going into transplant that this was a risk… rejection is kind of a given.
However, what we didn’t expect is that Kate would have rejection combined with CMV and the possibility of her not metabolizing the antirejection meds…which is what put her at risk and caused both the CMV and the rejection. It is very disheartening when the immunosuppressant guru of our transplant team says that Katy’s rejection is the worst case he has seen since he has been with the program. He then goes on to say that he has no idea why she hasn’t responded to the aggressive treatment. And all but throws his hands up in the air out of frustration.
Finally after 5 weeks and 2 super doses of steroids the third biopsy finally showed that although Katy is still showing signs of rejection. It is now a 1R which is substantially decreased and a step in the right direction.
In between all this craziness and hospital stays we have strived to make this a fun summer. Unfortunately Katy was too sick to travel North for Cousins Weekend. But, Patrick and I did escape for a quick 24 hour whirlwind stay with our favorites. I needed some love from Nora and Patrick had a blast with the cousins. I missed Katy and couldn’t last the weekend.
While we were away Katy and Daddy had a Daddy daughter date! Dinner and a show! They went to go see Annie at the local theater house. SHE LOVED IT!
We tried to balance our days. Katy needed a lot of time to rest.
And we were back and fourth to the hospital A LOT
But, we did spend some time at the park…
We visited with family that was in from out of town and had fun playing with Aunties.
Katy got her back to school hair cut and her nails done! Girl was dying for a day at the salon!
So we fit it in between Echos and blood draws!
So although our summer was lacking in lazy days at the beach…and included way too many days at the hospital. We survived. We had fun. We are excited to start this next chapter. Katy is starting Kindergarten this week and Patrick has already moved up to Pre K.